Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 My sister-in-law is taking Gleevec for CML (diagnosed 1 year ago). It has been very effective for her, in fact they cut her dosage in half and her condition remains controlled. Side effects are very troublesome lately: face peeling and peri-orbital swelling. lives in Fargo North Dakota and is hoping to find others who suffer from CML for support. She can also get to Minneapolis area if need be. Any ideas/suggestions will be much appreciated. She does not have access to a computer, thus my involvement. THanks Jan Lutich Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2007 Report Share Posted August 27, 2007 My sister-in-law is taking Gleevec for CML (diagnosed 1 year ago). It has been very effective for her, in fact they cut her dosage in half and her condition remains controlled. Side effects are very troublesome lately: face peeling and peri-orbital swelling. lives in Fargo North Dakota and is hoping to find others who suffer from CML for support. She can also get to Minneapolis area if need be. Any ideas/suggestions will be much appreciated. She does not have access to a computer, thus my involvement. THanks Jan Lutich ___________________ Hi Jan, Welcome, I am glad you can come to the list to get information for your sister-in-law. What dose is she actually on now? I am concerned when you say they cut her dose in half because most people stay on the full dose. If she was on 800mg and is now on 400mg, then that might be OK.........but anything less that 400mg is NOT considered to be a therapeutic dose for most people. And, by what means did they determine that the drug is working for her.....it CANNOT just be from a normal blood test and saying that her white count is normal. You only know how well the drug is working by doing tests such as FISH, pcr and additional bone marrow biopsies. Please provide us more information so that we can help you determine if she is being treated correctly.....a lot of local oncologists have very little experience with CML or Gleevec. She could contact the Leukemia and Lymphoma Society to see about finding a first contact type of person, someone she could communicate with by phone. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 Hi Jan, I have been on 400 mg's of gleevec since April of 04 and still suffer moderate to severe side effects, mine are managed by pain meds, over the counter nausea meds, and since my dx I have anxiety issues which are handled by xanax..I am sorry your sister in law is having problems, is bone or joint pain one of the side effects? Terry On 8/27/07, Cogan <ncogan@...> wrote: > > My sister-in-law is taking Gleevec for CML (diagnosed 1 year ago). It > has been very effective for her, in fact they cut her dosage in half > and her condition remains controlled. Side effects are very troublesome > lately: face peeling and peri-orbital swelling. lives in Fargo > North Dakota and is hoping to find others who suffer from CML for > support. She can also get to Minneapolis area if need be. Any > ideas/suggestions will be much appreciated. She does not have access to > a computer, thus my involvement. > THanks > Jan Lutich > ___________________ > > Hi Jan, > Welcome, I am glad you can come to the list to get information for your > sister-in-law. What dose is she actually on now? I am concerned when you > say they cut her dose in half because most people stay on the full dose. > If > she was on 800mg and is now on 400mg, then that might be OK.........but > anything less that 400mg is NOT considered to be a therapeutic dose for > most people. And, by what means did they determine that the drug is > working > for her.....it CANNOT just be from a normal blood test and saying that her > > white count is normal. You only know how well the drug is working by doing > > tests such as FISH, pcr and additional bone marrow biopsies. Please > provide > us more information so that we can help you determine if she is being > treated correctly.....a lot of local oncologists have very little > experience with CML or Gleevec. > > She could contact the Leukemia and Lymphoma Society to see about finding a > > first contact type of person, someone she could communicate with by phone. > C. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Dear Eborchew, Sorry to hear about your symptoms. Disappointing News: I fear you are not alone Other Hand: You can get off of that list, I believe. I too have experienced your symptoms from the IBS to itching and cramps (wow, tell me about those...). What helped me was similar to what your doctor had mentioned. Though not tonic water, I drink plenty of water. Good ole plain water, and plenty off it. I'm no doctor, nor do I play one on TV. I do believe that since I've been drinking plenty of H2O (something which I never cared for), my cramps are almost non-existent. I say almost for when I get beyond " myself " and cease to drinking the water in buckets, the cramps return. Also, the itching, swelling around the eyes (try more rest) and the other symptoms have all gone. Now this may not work for all but I'll swear by it. I now see the effects of remaining hydrated; Water Works! Of course you'll go to the bathroom more and sometimes perform both functions in there but it's worth it to free my bodies of those other aches and pains. Good Luck... Yrulooknback eborchew <eborchew@...> wrote: I'd like to know what everyone experiences as they continue on Gleevec. MY doctor is convinced I'm in remission (wbc is 4,500 down from only 39,000 - but the Bone Marrow test confirmed the presence of the Philadelphia Chromosone) I have swelling around the eyes and cheeks.....I take a Lasix type pill when it becomes bad. I have irritable bowel sydrome......(may have had this before Gleevec but now it's worse) I am very tired (slightly anemic....10.3)....and have all kinds of aches and pains which I can't differentiate from the normal arthritis. And muscle cramping in my legs and hands (even with potassium supplement). The doc suggested tonic water to alleviate this. I also have non-specific bumps, or hives, in various places that itch? Benedry seems to help but makes me sleepy. So am I a complainer or amongst you? in Arizona Remember to smile at people, someone may see you and return the favor! Keyon --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Like Margaret says- hang in there. Most symptoms do go away- I am at 7 months of treatment and I still have the swelling around my eyes and a slight rash on my face. In frequent muscle cramps and bone pain and maybe once a week I may get the stomach cramps if I don't eat enough or eat the wrong food when I take my meds. I also have been losing my color in my fingers and my feet. My eyebrows/eyelashes are pretty sparse but I think that is because I have been anemic since starting the meds. On the positive side since taking gleevec, I have now 10 strong nails and a area of enhancement that I didn't need to get from a plastic surgeon. Chi --- Margaret Peake <mpraymond@...> wrote: > I had all those symptoms and more the first few > months of gleevec but after almost 12 months, most > symptoms have mostly gone except for fatigue and > some muscle cramps and bone aches but drinking lotsa > water seems to help. > > Hang in there, it'll get better > Margaret > Yrulooknback <yrulooknback@...> wrote: > Dear Eborchew, > > Sorry to hear about your symptoms. Disappointing > News: I fear you are not alone Other Hand: You can > get off of that list, I believe. > > I too have experienced your symptoms from the IBS to > itching and cramps (wow, tell me about those...). > What helped me was similar to what your doctor had > mentioned. Though not tonic water, I drink plenty of > water. Good ole plain water, and plenty off it. > > I'm no doctor, nor do I play one on TV. I do believe > that since I've been drinking plenty of H2O > (something which I never cared for), my cramps are > almost non-existent. I say almost for when I get > beyond " myself " and cease to drinking the water in > buckets, the cramps return. Also, the itching, > swelling around the eyes (try more rest) and the > other symptoms have all gone. > > Now this may not work for all but I'll swear by it. > I now see the effects of remaining hydrated; Water > Works! Of course you'll go to the bathroom more and > sometimes perform both functions in there but it's > worth it to free my bodies of those other aches and > pains. > > Good Luck... > > Yrulooknback > > eborchew <eborchew@...> wrote: > I'd like to know what everyone experiences as they > continue on Gleevec. MY doctor is > convinced I'm in remission (wbc is 4,500 down from > only 39,000 - but the Bone Marrow test > confirmed the presence of the Philadelphia > Chromosone) > > I have swelling around the eyes and cheeks.....I > take a Lasix type pill when it becomes bad. > > I have irritable bowel sydrome......(may have had > this before Gleevec but now it's worse) > > I am very tired (slightly anemic....10.3)....and > have all kinds of aches and pains which I can't > differentiate from the normal arthritis. > > And muscle cramping in my legs and hands (even with > potassium supplement). The doc > suggested tonic water to alleviate this. > > I also have non-specific bumps, or hives, in various > places that itch? Benedry seems to help > but makes me sleepy. > > So am I a complainer or amongst you? > > in Arizona > > Remember to smile at people, someone may see you and > return the favor! > > Keyon > > --------------------------------- > Never miss a thing. Make your homepage. > > [Non-text portions of this message have been > removed] > > > > > > > Margaret , > mpraymond@... > margaret-raymond@... > > > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Get easy, one-click access to your favorites. Make your homepage. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
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